It was good while it lasted.

As any metastatic cancer patient understands only too well, what doesn’t kill you often just keeps trying.

I’ve been in this battle for so long now–more than eleven years–and most of that time has involved active combat with an ever advancing foe. But thanks to lorlatinib, my disease has been stable since June of 2014; my most sustained period of response yet. As a bonus, I’ve felt so damn good it’s been easy to imagine myself cancer free.

However, my scans have always told a slightly different story, with remaining nodules and opacities scattered here and there.

Lungs and Airways: The patient is status post left lower lobectomy for lung cancer. There is a left lower lobe solid nodule on image 41 series 201 measuring 5 mm unchanged dating back to 5/14/2015. There is also subpleural patchy opacity in the left lower lobe image 63 series 201 that remains stable compared to 5/14/2015. There are small centrilobular groundglass nodules in the left lowerlobe image 51 series 201 also stable compared to 5/14/2015 the largest of whichmeasures 9 mm. There is a stable 2 mm right upper lobe nodule image 32 series 201. There is a stable subpleural groundglass nodule in the right upper lobe image 48 series 201 measuring 5 mm. A second groundglass right upper lobe nodule measuring 5 mm but is essentially unchanged from 12/10/2015 and 4/14/2016. A 4 mm solid nodule along the right minor fissure is stable. There are no new nodules. Pleura: There is a small left basilar postoperative pleural effusion that remains essentially stable.

The words unchanged and stable are absolutely key here.

However, on my scan report today it was noted that one nodule had in fact changed size: There is a 5mm nodule on image 52 that appears to have grown since 5/14/2015 when it measured 3 mm but is unchanged compared to 3/6/2016.

Obviously it had escaped the notice of previous radiologists. However, upon reading today’s report, my oncologist Dr. Shaw reviewed the scans and agreed that this particular nodule had in fact enlarged and likely represented progression.

Nothing to panic about but a potent reminder that shit is still real.

Dr. Shaw is already talking game plan. We will scan again in three months. If the nodule continues to grow, we might biopsy in an effort to determine what the mechanism of resistance is. If it can be identified, I might be a candidate for a combination therapy of ALK inhibitors. As this is a solitary nodule and in my right lung this time, surgery is a possibility. So is radiation.

Linnea, The most important things I read here are your last two sentences:”Stability may have been rattled but I’ve still got options.
And honestly, that’s the most important thing.” Yes, that and your ever impressive positive outlook and amazing ability to keep fighting!

I’m sending you hugs and love. I cannot imagine how it feels to get less than positive news. There are so many of us out here cheering you on. Just know we’re your support from afar sending good vibes and prrayers.

I’m always keeping you in my thoughts. You’re amazing and inspiring to so many others. Options are always the best thing to have! Thank goodness for the wonderful team working with you and your own tenacity.

I feel wordless. Is wordless a word? Linnea, that sucks, and I’m sorry you have to deal with again. This shit is insidious, and it just plain old sucks! My advice – and I truly have none worth listening to – is to go find that new baby in your building, find and sit in a nice reclining chair, and just lay that baby on your chest and breathe. Baby therapy. If you need someone to cry on, or someone to scream at, I’m here. I’ve also been known to be good for a laugh. All love dear.

After following your blog for so long and understanding your joys I will tell you after much the same history, that VATS with a good surgeon is a very worthy option if surgery is a choice. Then we move on from there! Best of luck to you and courage to complete the next round of this terrible disease, but at least we have been blessed with time and options to use wisely.Aren’t we all just walking each other home, some with warped speed and some, like us, with blessed but winding paths to stop and smell the roses.

Great post again. Am not sure who your intended audience is Linnea but you make some great points that can help others in similar situation. 2 years stable is really good going. I got 2 years treatment free and it was really good while it lasted. It started growing again and the oncologist did her usual magic and got it back to stable within months. Vigilance is key I think. If you have done it once then your body knows how to do it again. Having trust and faith in your medical team as you so obviously do is really important. There is no under estimating having good people by your side. Not panicing is really important, Panic is not useful and certainly once there are options, is not necessary. My oncologist informed me that she has more weapons and I find that very re-assuring. And yes, shit does happen. Thanks for reminding me of all those points. Your story and attitude are really helpful Linnea. Tom

Linnea,
My husband was diagnosed with stage 4 lung cancer in May 2012 at the age of 46. He went through radiation and the first line treatment and he has been in remission for a while. He has Avastin every 2 weeks and Alimta every 4 weeks indefinitely until they stop working. Yes, we hear there are A LOT OF OPTIONS out there. Thank you for being brave.